Disappointed and Let Down.......

[Stresshead]

I've just been to lunch with my friend and to be honest after looking forward to it I hate to say it but I couldn't wait to come home.

I look after my dad with Alzheimers. He has lived with myself and my husband now for over 2 years. We moved him from his home 150 miles away so we could look after him and try and save him from having to go into care. It's hard......I don't have to tell you as you're all going through it as well. One of the things that I find hardest is that I'm an only child, lost my mum when I was 8, have no relatives living any where near me and as I am also relatively new to the area have not many friends here either. I feel lonely and overwhelmed by the enormity of looking after someone with this awful disease.

Dad has gone to his luncheon club today so I was looking forward to going for lunch with my friend. I know this subject has come up before but I'm frustrated by the fact that she doesn't seem to be at all interested in what things are like in my life. I don't want to be an Alzheimers bore but I can't help but feel that as a friend she should surely be able to recognise that I could do with some support and a shoulder to lean on but I get nothing. When I try and bring the subject up she just glazes over or becomes distracted by one of her children. Whilst with her today I got a call from the club that dad had gone to which sent me into a mild panic. Whilst I was talking to them she made a phone call to her husband to talk about a party they are going to at the weekend (how nice) and when I got off the phone she didn't even ask if everything was ok. I'm so disappointed.

Maybe I am a bore but at this moment in time my life is completely taken up by this awful, unpredictable, cruel disease. I've forgotten what it's like to spend my weekends at parties or going out for dinners and now I'm starting to feel like there is no point in spending time with other people as they just don't understand how things are for us.

It's just another thing that Alzheimers throws your way.

Sorry for being so gloomy.

Take care all xx

 

[Cat27]

I don't think anyone really understands the true awfulness of dementia until they're living with its effects.
Have you looked into getting carers in to give you a break?
Have you thought about respite?

 

[Lindy50]

Oh Stresshead, I'm sorry you have been so disappointed - but I do so know how you feel. Nothing but caring and dementia seems important to me at the moment, which I know is not a good thing, but how on earth do we manage to live in such different universes as our friends, and still have something in common?

I'm sure it can be done - and it's on my mind too, today - but meanwhile, I must get to mum's....

Just wanted to send you a big ((((hug))))

Lindy xx

 

[sonia owen]

Only carers really understand where you are coming from. But I found myself after caring for my mum for over 5 years, that I was beginning to lose myself. So I joined our village friendship group, I go along when I can. They have some very good speakers come. I so enjoyed the talk about the dogs for the disabled the other week. They run coach trips, no pressure. I really enjoy going so I can have something of my own.

Take care
Love Sonia xxx

 

[kingybell]

I really understand but try not to be too hard on your friend.
My grandad had dementia 10 yrs ago and mum cared for him. I have to admit at the time I wasn't very supportive, mainly due to my lack understanding.

Now I look after my mil I really understand the hard work dealing with this disease is.

What I am saying is if dementia is not in your world you tend not to understand it.
Give your friend another try and speak to her about the things you used to talk about before all this.

 

[susy]

How about trying to widen your own horizons. Is there any chance of someone else looking after your dad for a couple of hours while you go to an organised social thing. Something like the women's institute or a music group anything really you want to do. To be honest the thought of doing something for you will feel daunting and difficult and if you want you can throw up all sorts of excuses NOT to do it but really.... Look after you whilst making sure your dad is ok too and you can open up your world massively and in doing so this will not only benefit you, it will benefit all the new people you meet and your husband and dad too.
Give it a go, what have you got to loose?
As for your friend, lots of people unfortunately/fortunately don't have any empathy with us as carers. They really have no concept of how much a prisoner it can make you. Please don't judge her too harshly. I'm sure she means no harm, she simply doesn't get it.

 

[Summerheather]

I feel for you, I never quite know what to do when someone asks about my mum who lives me with Alzheimer's - I know I can hear myself oversharing. I'm lucky in some ways though, I work and that is in some part my respite.

I would say, join some clubs, and get yourself some more friends - I tend to go out for coffee with various people and that's a good break.

Once you have more friends you can then decide whether you want someone who doesn't give you at least some support in your life.

 

[sistermillicent]

I began to see the glazed look with some of my friends too and realised that actually they couldn't take it in, they didnt get it at all. Worse than this was when they said such stupid things as "you realise it's the disease, not your mum" Oh really? well that makes it all ok then!!!
But I got rather bitter and twisted sometimes and it didn't do me any good. I came on here quite a bit and got it out of my system, I advise you to do the same.

And just a word of warning.... a couple of months ago a friend of mine phoned and talked about her mother's early dementia for over an hour non stop, and I am afraid I found my ears starting to glaze over and pulled myself up and listened again. It was hard work.

If you can, go out with friends without children. You need someone who isn't distracted.

 

[tryingmybest]

I'm so sorry you feel like that but I also feel so alone. At the end of the day most people are selfish and don't care or try to understand. My life has completely changed now since mum moved in with me. My two best friends said on the phone yesterday they feel as they've lost me. They don't understand I cant socialise anymore.Nobody really understands what its like to be a fulltime carer and having to put your life on hold unless theyre doing it themselves with no help or support. I just get on with it and try to do my best for mum as that's all I can do. Xx

 

[Stresshead]

Thanks guys for all the replies. I'm sorry if I sounded grumpy and miserable yesterday. I sometimes think my expectations of my friends are a little too high and that's why I feel so let down. I am and always will be a bit of a thinker and I know that in the past when the tables were turned I have been the first to be there for them........but hey ho everyone's different.

Being a carer can make you feel very isolated and alone which is another reason why this forum is so invaluable as you know that you are among people that are walking the same path as you.

Your comments about finding a social group or activity that I can join are bang on right and I'm going to start to look into that. My social circle is way too small and it's time that I started to broaden it and meet new people.

I hope today is being good to you and thanks again for your replies.

Take care, L xxx

 

[Mibs]

I think it's the internal grieving that eats away at you - it's insidious, relentless and invisible.
To others you seem to be in a companionship role for your loved one, with plenty of 'spare' time to enjoy yourself and have an active social life. I've been accused of wallowing in our situation (hubby with AD) and not motivating myself enough!
Whilst it's very true that this caring lark soon sorts your true friends out from the rest, I would urge you to give everyone a second chance, arm yourself with some mutual topics and try for an hour or so to put the caring to the back of your mind.
Oh, and sort out some respite care for yourself sharpish.
Post away on here, it does help
Mx

 

[Lindy50]

I think it's the internal grieving that eats away at you - it's insidious, relentless and invisible.
To others you seem to be in a companionship role for your loved one, with plenty of 'spare' time to enjoy yourself and have an active social life. I've been accused of wallowing in our situation (hubby with AD) and not motivating myself enough!
Whilst it's very true that this caring lark soon sorts your true friends out from the rest, I would urge you to give everyone a second chance, arm yourself with some mutual topics and try for an hour or so to put the caring to the back of your mind.
Oh, and sort out some respite care for yourself sharpish.
Post away on here, it does help
Mx

100% agree with you Mibs xx

 

[Vesnina2]

... Maybe I am a bore but ....

This is why this place is so great and I thank many dozens of of times to creators of this forum and all people who keep it going, including all the contributors.

 

[susy]

So pleased you intend to broaden your horizons. You won't regret it. You go girl xxxx

 

[Suzanna1969]

I've felt recently that a lot of my friends seem to have given up on me or just forgotten me. I used to have a mad social life, travelling to London at least a couple of times a month and staying with friends, going to nice restaurants, bars and clubs and having a fine time of it! Ever since I've found it difficult to get away so much (due to financial restrictions now I've given up work as well as time constraints) I've not heard from many of them. Out of sight, out of mind? It leaves a bitter taste to be sure.

I've always found it very boring hearing about other people's children and not many of my friends have them or, if they do, they're nearly grown up now. Only one of my friends has young children and I remember going to her accessory party a few years ago (yes, an accessory party!) and really not being keen but she was afraid nobody would turn up so I went to support her. In fact loads of mums from her son's school turned up. The first thing they all said as the came through the door was 'Oh it's so nice to have a night off from the kids!' And what did they talk about ALL NIGHT?! Yes! *&£$*ing kids!!!!!

I was SO bored I drank all the wine and bought a really nasty belt before passing out on her sofa... oops!

I think the above posters have it spot on, nobody can understand what dementia does to the carer as well as the sufferer. I try not to talk about it exhaustively, I don't want to, I want to forget about it for a few hours! But it does creep in to everything because it takes over every aspect of your life, much as children do I suppose. But my friend's school mum posse chose to have their children (well, most of them did!) whereas I didn't choose to have my Mum get dementia.